The Faces of DIPG: Gabriella Torres

Gabriella Torres was five when she was diagnosed with DIPG in March of 2015.

Opinionated. Strong-willed. Go-getter. Relentless. Passionate.

These are words describing Gabriella Torres, mature beyond her years. Gabriella was diagnosed with Diffuse Intrinsic Pontine Glioma on March 17, 2015, gaining her angel wings the week following her sixth birthday on November 7.

She was fueled by faith and a rock for her family, taking her diagnosis and treatment in stride and never complaining about the hand she was dealt.

“She was like that pre-diagnosis,” said dad, Cecilio, “but there was this maturity that developed when she was diagnosed that was absolutely amazing. It amazed her physicians, us, her brother and sister.

“She told (mom Isabel) that she wasn’t afraid of anything. She said, ‘You don’t have to be afraid if God is with you.’ When she said that, it took everybody aback.”

Just Being A Kid

Gabriella and her brother and sister.

The Torres family took Gabriella to the hospital in August because she was complaining of back pain. The cancer had actually spread to her cerebral spinal fluid and, by the third day they were there, Gabriella was paralyzed from the waist down.

“The doctors pulled us aside and said, ‘she’s going to die – it could happen tonight,'” recalls Cecilio. “So they told us that we needed to tell our two older kids – at the time they were 8 and 7.”

Gabriella didn’t pass away that night and, a couple days later, the doctors tried radiation to her back to see if they could prolong her life. The radiation seemed to work, and the Torres family was given three more precious months with their daughter.

“We had her late August, all of September, all of October, and then the early part of November,” said Cecilio. “She got to start school — she started kindergarten.”

Gabriella so enjoyed school, she actually kicked her dad out of the classroom.

“She was pretty blunt,” said Cecilio. “She said, ‘Dad I don’t want you to stay with me, I want you to go.’ She wanted to experience what it was like to be alone at school with her teacher.

“We didn’t want to, but we went ahead and did that and I think that was one of the best experiences of her life, because she really got to experience being a little kid.”

Unexpected End

Sisters.

The Torres family wasn’t ready when Gabriella passed away on November 7, 2015. All was okay on November 5 when she suddenly took a turn for the worse. Cecilio and Isabel put Gabriella into hospice November 6 at 9 a.m., and she was gone the following day.

“It tells you the brutality of this disease that it can just snuff you out from one minute to the next,” said Cecilio.

The day Gabriella got sick, Cecilio was supposed to put together a stroller he had purchased so he could run with her. It had taken him awhile to find just the right stroller to accommodate her needs and the two of them were eager to get started.

“I received it three days before she passed away and I promised her I was going build it on Friday,” said Cecilio. “That’s the Friday that she worsened and on Saturday she got sick.”

Cecilio considered keeping the stroller to run with, but instead chose to return it for a very specific purpose.

“That refund money is going to be the first donation we’re going to give (as a family),” he said.

The Torres family will give that donation to Dr. Owen Becker, a DIPG researcher at Duke University they spoke with while Gabriella was still alive. The plan is to go to Duke and give the money to Dr. Becker personally.

“It’s specifically the amount we used to buy the stroller,” said Cecilio. “It’s very sentimental to us. It’s not very much, it’s like $670 or something, but it’s the fact that that money was specifically for her and I to run so we could bring about awareness for DIPG.

“So we want to fly out there as a family and meet him in person, tour his lab, and be able to give him that. It would mean a lot to our family to feel like we’re making a difference.

Getting Through Each Day

Losing Gabriella was devastating for the Torres family — they struggle to get through each and every day.

“Life is not the same,” said Cecilio. “We always considered ourselves a party of five. That was our family motto – a party of five. We don’t have that anymore. Obviously we miss our girl terribly. The kids miss their sister, we miss our daughter.”

One way they are channeling their grief is through a foundation that will fund research and help other DIPG families. When Gabriella was diagnosed, Isabel was able to leave her job. Cecilio then stopped working in August.

Despite that cut in income, they never missed payments thanks to support their received from the community and grants they received from different foundations. The Torres family wants to have that kind of impact on others.

“There are a lot of families still to this day that are being diagnosed with this awful disease and they need support, they need help, and they should be able to have the opportunity to also not work and enjoy time with their child,” said Isabel.

“We want to be able to help other families pay their rent, make a car payment for them, pay their light bill, things like that. We will have a research aspect of it, but we also want to be able to help families to encourage kids to be strong like Gabriella.”

Living For Their Warrior

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Picking themselves up and living each day is incredibly difficult without their strong girl, but the way with which Gabriella lived her life gives Isabel and Cecilio no choice but to press on.

“She was a warrior,” said Cecilio. “As easy as it is to lay down and mope, we choose not to do that because that’s not what our little girl was all about. She would never do that, so — as difficult as it is — we move on. But now we move on as a family stronger.

“We remember her daily. We talk about her a lot. We never forget the hell that she went through, but we also remember the strength that she exhibited.”